Today I cooked my first Thanksgiving dinner--and it was GOOD! I should say that Blake and I made our first Thanksgiving dinner because we were a team. My parents and brother came, and we had a very nice little Thanksgiving together.

Georgia ate enthusiastically.


Nate ate an unbelievable amount of sweet potatoes.

Lucas was stuck in traffic and running late, and we were totally going to eat without him, but he got there just in time. :)

Here is proof that sometimes my children play together like little angels.

Thanksgiving aftermath. I take this as a compliment.

Georgia ate her chocolate cake even more enthusiastically than her turkey.

She loves her brand new hot pink Christmas tree.

 And we had lots of quality play time with Granna and Pops.

And Uncle Lucas.

The last couple of weeks have been stressful and uncertain and just a little nutty, but tonight, our bellies are full, the kids are sleeping soundly, and we're just sitting in the glow of the Christmas tree(s) thinking about our good day. I'm thankful. Happy Thanksgiving.

School Decisions

I'm still in total denial that Nate will be in Kindergarten next year. This whole preschool thing has prepared me somewhat, but I can still pretend that it's just a little playgroup and not real school. But, I'm being forced to think about real school now. And that makes me feel all anxious and like my lungs are constricting a little.

I don't know why, but I have either the inability or unwillingness to think too far into the future. I don't think about how I'm going to die. I don't keep a surplus of food and extra cash in case of a nuclear holocaust. I don't think about what Blake and I are going to do when we're retired and the kids have left the nest. I don't think about who Nate will marry. I really haven't even thought about Georgia going to school. I just don't think about it. One reason might be that I know God's going to take care of us no matter what. I'm not afraid to die. (In the moment, I'm sure I'd be scared, but in general, I know where I'm going, and that it's good.) Bad stuff has happened to us in the past, and it hurt at the time, but it's always turned out fine or even great. I also know that the times when I worry and fret (like about Kindergarten), the reality is usually far less scary than what I worry it will be. So maybe to keep myself from needless worry, I just don't think about it. The furthest I usually plan for is what the kids will wear for the next holiday. :) (And I bought their Christmas outfits today!)

So yeah, ever since Nate's parent-teacher conference last month when his teacher mentioned there was a man observing Nate for a special program for students with physical disabilities, I have been worried and anxious. I talked with a friend who is a teacher, and she told me it's actually a great program at two schools in the city, and one of the schools is really close to our home. I called the school and asked to speak with the teacher over the program, and I liked what I heard. But then I looked up the school on greatschools.com, and it didn't get a very good rating. Then I talked with the counselor with the school Nate goes to now, and she told me that if Nate was in that program, he'd be in a self-contained special ed classroom for homeroom, then he'd go to a regular class the rest of the day. Then I spoke with another resource person in the school system, and he just vaguely "warned" me to stick with the least restrictive environment ... insinuating this wasn't a good program. More anxiety.

In the midst of this, I had called the counselor at his current school and asked to call an ARC meeting. (In Kentucky, that's the name for IEP meetings.) She didn't know that term, even though she's the person you are supposed to call to initiate ARC meetings. She said, "Spark meeting?" I don't mention this to make her sound stupid; I'm just saying this is more evidence that this school is not right for Nate. After explaining what an ARC meeting is, I told her I wanted to add a playground goal for his IEP because he has a hard time navigating the playground, and I feel it's keeping him from engaging with his classmates. And second I wanted information about him transitioning to Kindergarten, what programs are available to us, how does the "lottery" work for kids with IEPs, etc. She said she would gather some information and call me back.

She did call me back the next day and said she spoke with Nate's teacher about the playground situation. They had brought in a tricycle for him to ride--don't even get me started about this tricycle that he has to ride on a concrete pad, totally seperated from all the other kids, and only when they have enough hands for one of the teachers to be solely dedicated to helping him, which is not often--and that the PT is now working with him on using the playground appropriately. I told her I know about all of that, because I asked for the PT to work with him on the playground, but I want it in the IEP. Now, many people might think I am making way too big of a deal about the dang playground but first, it makes me mad that when they installed this brand new playground earlier in the school year, they gave NO thought to accessibility. I wish I had a picture of this playground to show you. Nate can "do" any playground he's ever been to. He can go up steps, across bridges, down slides, through tunnels, whatever. But this playground is all ladders and climbing structures and this crazy slide that the teachers don't allow any of the preschoolers on cause it's dangerous ... just hard stuff. And second, Nate already struggles with connecting with the other kids. It's November, and he can tell me the names of TWO of his classmates. His teacher says he's often in his own world. He has always played with adults--whether me and Blake or grandparents or therapists--and he just doesn't know how to play with kids his age. And I feel this playground issue is another huge barrier to him playing with his classmates. While they are climbing on this play structure, Nate is either running around it by himself or sitting in the mulch and throwing it up in the air. I ask him who he plays with at recess, and he says, "I watch the other kids play." Now tell me I'm upset over nothing.

She also gathered some information about the special program and transitioning to Kindergarten. She said it's way too early to have a transition meeting because the person who is evaluating him for the special program won't do his last evaluation until February, and they won't know about placement until around April. I explained that I don't want a placement right now. I want to know more about the programs and what our options are. That's when she told me that in the special program for which he's being evaluated, Nate would be in a self-contained special ed classroom and would go to a typical class from there. She didn't know what the evaluator was looking for or whether Nate would qualify for this program. I asked about the whole "lottery" system that our school district has--you have to apply to four schools, two close by you and two all the way across town, and you aren't guaranteed to get any of them. She said the lottery for Kindergarten is in January. I asked, Okay, if we don't know he's going to get into this program because his last evaluation is in February, and if we don't know if we even want him in this program, and if his transition meeting where we learn about these programs isn't until April, how do we know what schools to request in the lottery in January? She said, "Oh." She didn't know. She promised to find out more information, and so far I haven't heard back from her.

I took the day off today (It's funny to say that cause I had more work to do at home than I did at work!) so this afternoon I went to the school where they have the special program for which he's being considered. (Sorry to be vague, but this is the internet and all.) The front office notified the teacher--same one I'd talked to on the phone a couple weeks ago--that I was there, and she directed me to the self-contained special ed classroom. I have to say, I was really anxious, and a little emotional about this. First of all, it's Kindergarten. Second, this is a straight up special education classroom. I think special education is awesome for the kids who need it, and I'm not putting that down in any way. But you can understand that this is just not what I had pictured for my son. But as soon as I entered the room, I saw a kid I know! He has SB, and I've been working with his family a lot at work. The teacher asked me a little about Nate, and she quickly said that this classroom would not be for him. That class is for kids who have low IQs as well as physical limitations. Nate would be in the typical Kindergarten classroom.

She took me down to the Kindergarten class, and she said she actually had a little girl in there who had SB. Well, guess what--I know her and her family too! They were actually out on the playground at the time, so I was very interested in seeing this. The playground certainly wasn't as new and impressive as the one they installed at Nate's current school, but I looked around and saw that Nate would be able to access all the equipment! There were steps and slides and swings--we're good. Even better, there were three adults out there--the head teacher, an assistant, and an aid who was there to help this little girl when she needed it. She didn't hover over her or make a big deal out of it, and she was helping all the other kids too, but when this little girl wanted to get back in her walker or climb the steps up to the slide, the aid gave her the help she needed and no more. The little girl was totally included with the other kids and even got down with all of them to do push ups before going in, and they asked her to be the counter.

I had lots of questions about transportation, special equipment, therapies, the cafeteria, the gym, etc, so the teacher took me to speak with the school counselor. She was very happy to talk with me, and she was WONDERFUL. She said this school is actually intended to be for kids who just need a little extra support with the physical stuff in regular classrooms. Only in the last two years have they gotten more kids who have low IQ in addition, so they've initiated the self-contained classroom for that reason. But their goal is always the least restrictive environment. They have enough aids to provide assistance to the kids when they need it. With everything they do, they think about accessibility. All the kids at this school think of wheelchairs and walkers and braces as just part of normal every day life. The typical kids don't bat an eye at kids who need a little help. In fact, they're the ones protecting the kids in wheelchairs and such. For example, recently someone stepped in front of my little girlfriend in Kindergarten when she was in her wheelchair, and one of her classmates set that kid straight! There are special bathrooms equipped with whatever you need. And Kindergarten drop off is right beside the Kindergarten door so the little guys don't have to walk so far in all the hustle and bustle.

I asked her my questions about the lottery and what if Nate doesn't get accepted to this program, etc. As she was talking, I realized that Nate isn't being evaluated to see if he's doing too *well* to qualify for this program. They're evaluating him to make sure he doesn't have more needs than they can handle. Which isn't the case. She told me that just with his diagnosis and IEP, he is guaranteed a spot at their school. She also said that although she's biased, she knows this is the best place for Nate and kids who have physical disabilities. They know what they're doing, and they're good at it.

Here's the thing. The school where Nate is now is very close to our home--less than a mile--and all the kids in our neighborhood go there. It's a very new (about 3 years old) and nice school. But it sounds like Nate is one of their very first students with a physical issue going on. And you can tell. His teacher is great, and I really like her and most of the people I've encountered at the school. But they don't think about accessibility, and call me selfish, but I don't feel like being the trailblazer there. I still don't know what I'm doing, and I often don't even know what to ask for. I am perfectly willing to advocate and fight for Nate whenever necessary (and do so especially with Medicaid on nearly a weekly basis), but why would I choose to do that when there is this awesome school already equipped for him and ready to meet his needs, and it's like 2 miles from our home? It's a no-brainer.

So like I said earlier, all that worry and anxiety over a "special" program, when the reality is that it's going to be just what he needs. I'm really excited about it, actually. It's making Kindergarten seem less scary knowing that he'll be in good hands.

Halloween, the missing kitten, and Georgia the peanut

Here are Nate and Georgia as Captain Hook and Tinkerbell!

They looked very sweet and both liked their costumes. Nate got so many compliments on his great costume! My mom got him the Disney Store version of Captain Hook, and it is amazing. Georgia, on the other hand, got a $20 Tink costume, and you could tell the difference. :) Next to Nate, it was a pitiful costume, but she looked really adorable in it.

They had several chances to wear their costumes and trick or treat. A couple weeks ago we went to the Halloween Party at the Louisville zoo with our Bible Study group. Both of the kids fell asleep on the way there and Nate especially was in a pretty sour mood until he got some candy!

 Jack Sparrow said, "Hello, Captain!"

Then last Friday we went to an organization called Dreams with Wings' annual Pumpkin Stroll. There were thousands of jack o lanterns lining the sidewalks and all over the lawn on the Bellarmine University campus. When we first got there, before it even really got started, Nate fell flat on his face! It didn't look too bad that night, but by the next day it looked like this:

He got over it soon enough though. We were pretty special, because we were "with the band"! Our babysitter Alisa and her family and some friends have a band called Mike Bush and the All Stars, and they play at events like this. They were awesome! They played for like 3 hours, and my kids danced pretty much the whole time. (That's Alisa dressed as grapes. She didn't realize until earlier that day that she would basically be a walking latex hazard for Nate! Ha! So after she put on her costume, he wasn't allowed anywhere near her. :) Great costume though.)

Nate got to play the drums during the show! Except the drummer gave him the drum sticks that were like rubber, and they were quiet? I don't know how to explain them because I have no knowledge of drum sticks, but anyway, you couldn't really hear Nate. I saw his little lip starting to stick out, so I went over and helped him, but after awhile, he looked like he was going to wail. So I ushered him out and sat down with him. (This was about the time Georgia fell asleep in my arms.) Later that night, I asked him if playing the drums was his favorite part, and he said, "No! Nobody could hear me!" :)

The next day, we went to an SBAK playgroup and carved pumpkins. Here's Georgia staring down Andrew for his brownie.

Okay, so Andrew has a big brother (no SB) whose name is Nathaniel (sometimes called Nate) and he is also 4, and he also loves Thomas the train. He and my Nate hit it off immediately. They went upstairs to play trains for awhile (Nate wore last year's Thomas costume that day), then we went outside to carve pumpkins. Nate saw that Nathaniel had a piece of candy, and he said, "Oh, I can't have that piece of candy." Nathaniel said, "No, I already put it in my mouth, but let's go inside and get you a piece, dude!" He was so funny!

One time Nate and Nathaniel were walking by, I heard Nathaniel say, "Okay, Nate, the first thing I'm going to teach you is how to climb a tree." Ha! Nathaniel started shimmying up this tree like a monkey, and Nate just stood there with his lollipop and said, "That tree is too tall for me. I can't climb it." So I showed him a tree right next to that one that had a lower branch and told him I'd help him climb it. He looked at his lollipop and said, "But I can't climb trees with candy." You are climbing this tree, mister! So I heaved him up in this tree, with Nate complaining the whole time (notice the yellow dum dum in his right hand), but he stopped whining long enough to say cheese for a picture.

After I got him down, Nathaniel started talking about the next thing he was going to teach Nate, and Nate said, "I think we should go in the house and get more candy."

After our playdate, the kids and I went to Aunt Mindy's house to spend the night! We haven't been there since last Halloween! It was trick or treat night there, and at first Nate had a hard time understanding why we were giving all of Mindy's candy to other people, he soon caught on and had a BLAST giving out candy himself. He stood on the sidewalk and called out to trick or treaters, "Anybody want some candy?! We got candy here!" Like a little salesman! It was hilarious. Georgia was also excited and just walked up and down the sidewalk over and over.

The next day, we came home, I took a nap! and then it was time for trick or treating in our neighborhood! Check out Maggie and the neighbor's big dog, both dressed as bumblebees. :) I bought Maggie that costume when we first got her (when she was our "only child") and she's worn it every year since.

Oh, the kids had such a great time. It was a race for candy! We went up and down our street, stopping at every house that had candy. Georgia insisted on going up every driveway, whether they had candy or not, and she got very mad if she didn't get something at the door.

When we came back home, Georgia rifled through our candy bowl. Turns out she just wanted to hold the candy--she thought it was just noisy little toys. Until I gave her a lick of my sucker, and then she was hooked. :)

Well, we had a great Halloween, but there was a little bit of a damper on it because we're missing one of our kittens. :( Last Thursday around noon, Blake let the kittens out on the back deck to play, as he always does when the kids are eating lunch so they don't bug them. Well, Allee Galloo came back, but Kooka did not. :( We haven't seen her since. I put fliers up around the neighborhood and one on our porch, so lots of people saw it while trick or treating and told us they would keep an eye out for her. I actually got three phone calls, but they turned out to be different gray kittens. We miss you, Kooka!

Her sister Allee was pretty distraught for a few days, but she's adjusting now. She has really taken up with the kids lately. She LOVES sleeping in Nate's bed, and he didn't like it for a couple of nights, but now he wants her in there. Sometimes he wakes up in the middle of the night and yells, "KITTY!!!!!" That's fun. Georgia follows her around meowing. She's really good with them and lets them pet/manhandle her.

So Georgia had her 15 month check up this week. This child still weighs just 21 pounds, 4 ounces! She could still fit in her baby carrier! Nate weighed this much at 6 months! :) She's in the 25th percentile for weight (for those that don't know, that means 75 percent of babies her age weigh more than her). She's 30 inches tall (45th%). She's just a little thing. But this girl eats like a horse. I'm not kidding, I have no idea where she puts it all. She eats nonstop all day long, and when she does eat meals, it's a lot of food! She's also sleeping very well these days. I'm a little ashamed to admit that we still use a swaddling blanket with her! We wrap it around her arms when we put her down, just to help her feel snug but also because she won't tolerate an actual blanket on her. One day Blake said he was watching her on the video monitor after he put her down for a nap, and she wrestled her arms out of the swaddle blanket, stood up and threw out all of her stuffed animals and the blanket, and laid down on her belly and went to sleep.

As of last week, she is now officially weaned from nursing. It was very gradual and pretty much on her terms, and I have to say I am really proud of myself for nursing for 14 months! When Nate wasn't able to nurse, I didn't know if I was capable of it, but this was a great experience with Georgia. I've noticed she still needs that direct contact with me, but now it's in the form of snuggling! Which is awesome, because she's never been a snuggler. She wakes up around 6:30 am and wants to come to bed with me. She'll snuggle in the crook of my arm for 5 minutes. Then she'll get up and sit with her knees on the bed and throw herself over my belly and lay like that for a couple minutes. The she climbs on top of me and lays belly to belly on me with her head on my chest. It's very sweet, and I enjoy it (unless I haven't had much sleep!).

Well, that's a long update, and we have a very big day planned for tomorrow. Nate has been asking to go to the train museum since ... well, since the last time we were there on Labor Day. So tomorrow he and Blake are going, while Georgia and I meet our girlfriends for a little shopping trip at Ikea! Have a great weekend!

Much needed updates!

A week and a half ago I posted about the Spina Bifida Worldwide Day of Prayer, and I haven't updated because there was news I wanted to share but didn't have permission yet. The day of prayer started in response to one woman who is pregnant with a baby who has Spina Bifida, and she was considering terminating the pregnancy. Last Wednesday was her first appointment with a pediatric neurosurgeon (and I have to say, most people who terminate do not go through with this step, and it's very important), so that was the significance of making that the day of prayer. We prayed for her to have an open heart and mind and for the doctor to give accurate and hopeful news.

What an amazing day that was. There was so much excitement and anticipation leading up to it, as we (other SB moms and I) spread the word on our blogs, through emails, to our church groups, and on Facebook. On Facebook alone, there were THREE THOUSAND people who committed to praying at the same time! And that does not even count the numerous prayer chains, prayer groups, family members, coworkers, and strangers who were not on facebook but heard about it anyway. And let me tell you, it was powerful, and it felt great. I knew that, no matter what this one mother decided, there were thousands of people with their eyes toward heaven praying for the futures of babies with Spina Bifida, and nothing bad could ever come from that. It was a rush.

That night, I kept checking my email for an update from the mom about her visit with the neurosurgeon. I finally went to bed and was reading, but all of a sudden I decided to come back downstairs and check my email again. And there was her update. The neurosurgeon told her the baby's lesion was low and small, the baby was moving its legs and looked great, and it has no signs of hydrocephalus. What does that mean? Pretty much best case scenario. She said she and her husband felt hope for the first time in weeks. They decided to keep the baby.

Praise God!!!!! How amazing is that? I still haven't gotten over it.

And yet, even after seeing the amazing power of prayer, I sometimes still have trouble practicing it in my own life. Just this weekend, I realized how terribly worried I have been about Nate. Not just about one thing, but many areas.

1. His school. Yes, I know he's just in preschool! A couple weeks ago I went to his parent-teacher conference, and his teacher mentioned that there is a man coming to observe Nate for a program for children with physical limitations to see if he qualifies, and he will be at the meeting where we discuss Nate's transition to Kindergarten. First--whoa--I have to start thinking about Kindergarten already?! And hold up! A special program?! Still, I'm getting anxious just typing this. I wasn't expecting that. I just thought he'd go to the same school he's in now, with an IEP. I asked, aren't there other kids with physical issues at this school? She couldn't think of any. Really? So I've been doing a little research about it, and maybe it will be a good thing. He would be in a regular classroom all day--they'd just maybe have an aid or co-teacher in the class to help Nate (and others) when needed. Then there's the whole issue of which school Nate should go to next year, and we're looking up test scores and ratings. Then there's an issue with the playground at school--there is just nothing on it that Nate is able to do. I hate saying that because I am definitely NOT one of those moms who says such things in front of my son or announces what my kid can't do, but the reality is he can't do anything on this playground. It's not at all accessible, and it's hard. They won't even let the preschoolers on parts of it because it's dangerous. So Nate is just running around by himself or getting in trouble for throwing mulch--well, what do you expect him to do? The PT's answer to this was to bring a tricycle for him to ride. Um, that would be great, except he'd have to be 100 feet away from all the other kids to ride the trike on the concrete pad, and he already has trouble engaging with the other kids--that's even an IEP goal! I'm just confused and not happy, and I'm calling an IEP meeting, dangit!

2. Nate has some major sensory stuff going on right now. For about a month, he has been putting his fingers in his mouth. Why? I have no idea. Apparently he needs "oral sensory input." But, it's cold and flu season, and that's just not sanitary. So I bought him this chewy necklace that's specifically made for this purpose, and we're encouraging him to chew on that instead of his fingers until this passes. Now he's getting in trouble at church and at home for swinging this necklace around and hitting others. Sigh.

3. His seizure meds come in sprinkle caplets, and twice a day we have to mix them in pudding or yogurt or something. And twice a day it's a battle. So at our last visit to the neurologist, we asked if there was a liquid version--yes! The way it's mixed, it only lasts two weeks, so we have to refill twice as often, but it was so worth it when for two weeks, we could give him his medicine twice a day with no fight. The second time we picked it up, the pharmacy said that Medicaid is now refusing to pay for it. Medicaid has never refused to pay for anything. So after our primary insurance, it was going to be $45. Twice a month. No, we aren't going to do that. So now we're appealing it and back to the sprinkle caps and hating it. I know this sounds like a very minor thing, and it is, but it's discouraging when it was just so easy for two weeks, and pretty much nothing is easy with Nate.

4. Potty training is stalled. I don't even really want to go into it--exhausting.

This has been all that Blake and I have talked about. What do we do, what are we doing wrong, how do we fix this, why is this happening. On Sunday I realized--I haven't prayed about this stuff. Well, that's not technically true, since all of these overarching issues are ones we've been dealing with for awhile, and I finally get to the point where I just give it all over to God. But then I take it back without really realizing I'm doing it. So that's what I'm doing again. I don't know the future, and I often don't understand Nate. I have no idea what school he should go to or if it even matters! I don't understand sensory issues, and I have no idea what to do to make it better. But I'm very glad that God knows the future and will lead me in the right direction if I trust Him too. And I'm very glad that the God who knit Nate together in my womb knows him inside and out and understands all of his quirks. It's going to be okay.

Even though I worry about him, Nate makes me smile more than anything. :) Yesterday he told me, "I like trains. Trains are awesome! Click on over to I love toy trains dot com!" What? Where does he come up with this stuff? I did look for that web site and was relieved that it doesn't exist, because I would have wondered about Nate sneaking on my laptop when I'm not around! Tonight we had cheese canneloni for dinner, and he was very cute trying to pronounce it. A few minutes later, out of the blue, he said, "This is great pasta." Ha! And tonight he and Georgia were chasing each other around the living room, and he said to her, "Come on, little fella!" It's just fun to sit down and have a conversation with him.

Georgia is apparently going through a growth spurt, because all she's doing is eating and sleeping. She often eats more than Nate does, and she is always ready for her next snooze. She's now in that phase where she says, "Uh oh" and THEN drops her cup in the floor! Stinker! She is saying more words every day and can almost hold a little conversation with you. A few days ago, Alisa said Georgia pointed at her banana. Alisa said, "Oh, do you want some of my banana?" Georgia said, "Yis." Alisa said, "Yeah, how does that sound?" Georgia said, "Good." And then she ate the whole thing! She will be 15 months in 4 days.

The weekend before last we went to the Halloween party at the zoo, where the kids got to wear their costumes for the first time. Nate was in a really foul mood until he got to eat some candy. All the way home he repeated, "That was so much fun." We have a big upcoming weekend planned: A pumpkin-carving SBAK playgroup Saturday afternoon, then the kids and I will go to Aunt Mindy's house for trick or treat night in Berea, then on Sunday we'll head back home for trick or treating here! Oh, the candy.

Let's Pray!

Do you ever get a little scared when you have an idea and then it actually takes off? That's what I'm feeling like now! It is really humbling (like in a scary sort of way) when hundreds, possibly thousands of people are reading something I wrote and didn't even really proofread, lol! I feel like I am leading a lot of people in prayer, and I am really scared of leading people in prayer!

But then I remember who is behind all of this. It is not me. It's all God--all by Him, all for Him.

If you are now thoroughly confused, let me explain. Many of my SB moms and I are all fired up this month about Spina Bifida Awareness Month, and especially about giving expectant moms hope that their babies are perfect gifts from God and they do not need to terminate their pregnancies. We want to DO SOMETHING. But we all keep coming back to "But all we can do is pray."

So, what if we all pray about it. And we do it at the same time. And we invite our friends and families and churches and strangers to pray about it with us. Imagine what could happen.

So I created a Facebook event called the "Spina Bifida Kids Worldwide Day of Prayer." We will pray this Wednesday, Oct. 20, at noon EST. As of right now, more than ONE THOUSAND people have committed to pray. And I won't be surprised if the ground shakes a little bit.

Below is what I wrote for the Facebook event, and it lists our specific prayer requests. If you have a facebook account, follow this link to say you're attending. If you're not on facebook, just let me know if you are participating.

***
October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are be...autiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.
So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.
We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.
Here are a few things you can pray about specifically:

1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.
2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.
3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.
4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.
5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.
Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.
“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Things overheard at the Payne house

Nate:
My feet are soooo hungry. They're ready for a snack!

My daddy is a giant.

(After tasting his green grapes) Hmmm. These taste like grass and my potty.
(Note: He has never tasted his potty, that I know of. It just happens to be green like grapes and grass.)

My wheels are tired.

That train is in my heart. And that train is in my heart. And that train is in my heart too.

(Flipping through a parenting magazine over and over until he finds an ad with a little boy in it.)

"There you are! I was looking for you everywhere in this!"

Georgia:
Puts pair of pants on her head and LAUGHS and laughs and laughs. Then takes them off. Then puts them back on her head and LAUGHS and laughs and laughs.

Kittens:
We wake up in the middle of the night to THUMP! KATHUMP! THUMP! The kittens take run and go's and hurl themselves up agains our bedroom door over and over again, until they bust it open.

Mama and Nate:

Mama: Nate, guess what! Memaw and GrandBob are coming on Thursday to stay with you and Georgia for a couple days while mama and daddy go to Las Vegas!
 
Nate: Begas? But I will miss you!
 
Mama: I'll miss you too, but you're going to have so much fun playing with Memaw and GrandBob.
 
Nate: But they don't live here.
 
Mama: They'll live here for a couple of days while we're gone. I bet Memaw will teach you new songs and play games ...
 
Nate: And maybe she'll play trains with me? (big smile)
 
Mama: Absolutely.
 
Nate: Is it Thursday yet?
 
*********
Okay, we're leaving in the morning for our trip to Las Vegas!!!! The company that Blake works for offers a Vegas trip as an incentive every year. Last year Blake went by himself and I stayed home because Georgia was only 3 weeks old. This year, we're leaving the kids at home! We've only spent the night away from Nate twice in his whole life, and both times were this year. I spent one night away from Georgia back in August, but Blake was here with the kids. So three days and two nights with both of us away ... I'm a little nervous! Nate will miss us, but he'll be fine. Georgia on the other hand ... I'm not so sure! I just hope she sleeps for Janie. She will probably surprise us all.
 
Even though I'm nervous about leaving the kids, I'm also really excited! I've never been to Las Vegas, and Blake and I haven't been on a trip by ourselves since our honeymoon 7 years ago! It's about time!

My Spina Bifida Awareness Month Post

For the last week, I've been thinking I need to write something about October being Spina Bifida Awareness Month, but I've just been mulling this around in my head. I'm always asking myself and others "What's the point?" What is the goal of this SBAK class we're doing? What do we want to accomplish with this mailing? What outcomes do we want to see from this event? And that's what I've been struggling with:

What's the point of Spina Bifida Awareness month?

I've never completely understood awareness ribbons. Breast cancer awareness--Who is NOT aware that breast cancer exists now? What's the real purpose? To me, it seems the purpose is to make us women aware that we need to do self breast exams and get checked out by our docs from time to time. Okay, that's a worthy goal, but is that the clear message we hear this month? And Autism ... well, the awareness campaigns have been pretty successful, I guess. Every time I see one of those puzzle clings on someone's car, I see another person affected. But again, what is the point of this awareness?

Every now and then I see a Spina Bifida Awareness ribbon or car cling, and I've actually never been a fan. To me, that just says, "Hey! Look at me! My kid has Spina Bifida!" So? Is that what I want everyone who passes my car to know about me and my kid? How does that help anything? (To be fair, probably the only reason I don't have one of those ribbons on my car is because they're not easy to find. I wouldn't go online looking for one to order, but if someone was selling them in front of me, I'm sure I'd buy one.) I have bought a bracelet that says "Spina Bifida Awareness--Hope." And I've just bought some awesome T-shirts that say "Redefining Spina Bifida." Those are clearer messages to me. (Okay, it's totally becoming apparent that I was a communications major.)

So tonight I finally sorted it out in my head. For me, there are two great things that can come from Spina Bifida Awareness Month. For others there might be other goals, such as advocacy for their children. But these are the two that stand out to me:

1. To make all women of childbearing age *aware* that they need to be taking their vitamins BEFORE getting pregnant. And since about half of all pregnancies are unplanned (60% in Kentucky, fyi), that means all of us should be taking a multivitamin or prenatal to help prevent birth defects by up to 70%. (Preaching to myself here too.)

Some people say they eat a healthy diet, so that's good enough. Uh-uh. Did you know you'd have to eat 14 cups of broccoli, or drink 8 cups of orange juice, or eat 200 medium red apples EVERY DAY to get enough folic acid? Honey, just take the pill and get it over with.

I'm going to be honest, I know this is an important goal simply because most people really are unaware, but this has never been my fire. I do work health fairs and explain all this to women, but it's sort of beside the point for me. And I know it's because I was taking 1mg of folic acid 4 months prior to getting pregnant, and it still happened. I also know it happened for a reason.

2. The other goal I see as important for SB Awareness Month is to let women know that if they find out their unborn baby has Spina Bifida, there is no reason to terminate that pregnancy. This is my fire.

I totally understand that overwhelming fear, because I was there too. I also wished the "problem" would just go away. I also got bad news ... The most severe form of Spina Bifida. L2--higher than average. Arnold Chiari Malformation and hydrocephalus. It was terrifying.

I chose to trust God. I knew He doesn't make mistakes, and if He gave this child to me, He was going to help me raise him. And I don't want to sound like a crazy person, but He told me so. I heard Him. Not audibly, but very clearly.

And this is what I got:

A handsome! ...

 silly ...

train-loving ... 

outgoing ... 

stubborn ...

Did I mention train-loving? He really, really loves trains ...

brave ... 

HAPPY! ...

running! ...

fun-loving ...

 

Daddy's boy ... 

totally adored ... 

musically gifted (That's right, I said it! He's gifted!) ... 

hard-working ...

Superman!

Does that look like a boy who has a poor quality of life to you? Does he look sad, or sick, or disabled?

Some might say, "Well, sure, but he's an exception." No, not really. It's true--Nate does not have a whole lot of medical issues. I know some kids who have fewer issues than Nate, and some who have more. But you know what? I think all of us think our kid is the exception. We all consider our kids miracles, and they ARE because we gave them the chance to be. Not because we're any braver or stronger or more patient or better parents than anyone else, but only by the grace of God.

Pumpkin Patch Pictures

On Saturday, Mindy and I headed out to Huber Farm to do a little pumpkin picking with the kids. It was a beautiful sunny day--warm in the sun but a little chilly in the shade. The perfect fall day.

We started out with a little shopping.

I got two little ornamental pumpkins for the kids and two pie pumpkins for me and Blake. Later, I drew faces on each of them to represent our family. Georgia's has a pacifier, Blake's has a goatee and glasses, and mine and Nate's have freckles. :) 

Anyway, we ate and wandered around for awhile.

By this time it was getting pretty cool, and I had to find a jacket of Nate's in the truck for Georgia to wear.

Then we took a ride out to the pumpkin patch. This was Nate and Georgia's favorite part of the whole day. Georgia clapped all the way out.

Once we got out there, the kids raced around while we looked for the perfect pumpkin for carving.

By the way, this looks just like a picture of Nate from two years ago, but I can't find it right now to compare the two.

Then it started raining. Bummer. We headed back in and listened to some music for awhile under a tree.

Here are a couple of really funny videos of Nate and Georgia dancing.

But pretty soon Georgia was shivering, so we left. On the way home, the road was so wet I actually lost control of the truck! Everyone was okay, but I was shaken up. Nate laughed.

So we have our pumpkins and our apple pie and our pictures. I guess that will do until we try it again next year!

And back to the good news--clinic!

Yesterday was Nate's big clinic day. We only go to clinic once or twice a year, and we were especially interested in one particular test he was having, so it was going to be a big day. Sunday night I was rushing around getting everything ready for our trip to Nashville the next day, and I went to bed at midnight and fell asleep like a rock.

Then Georgia woke up screaming at 12:15. I settled her down, but everytime I left the room, the floor would barely crack and she'd start screaming again. Finally I crawled out of the room. 10 minutes later she woke up again. And this happened over and over for the next hour. I knew I had to get up at 6 to start getting ready for Nashville. I was starting to panic.

I took her to Blake to let him try to get her to sleep, but she did not want Daddy. She would climb up me, stiffen out, and just writhe around miserable. We decided she had an ear infection, which we had suspected for a few days. At 2 am, I put her in the car to take a drive, but she still wasn't going to sleep. I knew I wouldn't have time to take her to the pediatrician in the morning, so I decided to go ahead and take her to an urgent care place. Except I didn't know where one was, so I just drove around looking for one. I asked the GPS, and it took me on a wild goose chase for something that didn't exist. Then I found myself 3 minutes from Kosair Children's Hospital and even though I felt silly taking her to the ER for an ear infection, I was just that desperate.

Of course when I took her inside she was asleep! Ugh. Until they took her temperature rectally, and that woke her up. A couple doctors later, I found out that her ears were absolutely fine. No ear infection. Seriously? The doctor said what I was describing--sometimes inconsolable, stiffening out, screaming--sounded like a condition some babies her age develop where something (intestines?) restricts like a microscope? I was so tired I did not understand half of what she said, but she wanted an x-ray of Georgia's belly. I held her down while she screamed. The x-ray was clean.

So, they determined, she must just be teething. What? You mean I brought my baby to the ER for teething? Wow, I'll never live this down. But even worse, she was still screaming.

I got home at 5:15 am and laid down for 30 minutes before getting in the shower. Awesome. We stopped by the brace place to pick up Nate's new braces, then I had to stop by the hospital to have blood taken, and Alisa met us at Subway for breakfast. Blake had a test at work and couldn't go, so I was soooo glad Alisa went with me. Usually when Blake is driving, I'm the one climbing halfway into the backseat to find a dropped paci or fix Nate's movie or stop someone from hitting, but this time, that was Alisa's job. :)

We got to the hospital in time to eat at the children's hospital food court and spend a blissful 15 minutes with the trains. On the first floor they have a great train layout with buttons to push to make the trains go. This was the highlight of Nate's day, and he'll be asking to go back to the hospital for weeks just for that reason.

First up was the urodynamics. A couple months ago I called the urology nurse to talk about potty training, and I asked them to do this test to look at Nate's bladder function to see if there is any reason we should not try to potty train Nate. Since then, he has become continent with his bowels--yay! Even though he pees on the potty a lot, we haven't been pushing him to stay dry until this test to see if it was even possible. He's always had pretty good results with the test, so that's what we expected today. They inserted a catheter and some probes and slowly filled his bladder with liquid, including dye, so they could watch on a screen what his bladder looked like as it filled. With SB, some of the problems can be fluid backing up into the kidneys (reflux), high pressure bladder (which usually results in reflux), or loose muscles that cause leaking. I'm happy to report that Nate has none of that! His bladder looks great as it's filling. What's funny is, as he laid there on the table for this test, he was watching a train movie, and he fell asleep. Catheter and all. And this happens every time he has this test! Why doesn't he nap at home? Anyway, the only issue was that they fill him up a little past the normal capacity for his age (6 oz, fyi), but he doesn't automatically empty. However, it was very promising that when he reached that level of normal capacity, he started rousing from his nap and was obviously uncomfortable. That means he can to some extent feel when his bladder is full! They wanted to make sure he emptied all the way to see if he ever leaves any residual urine in the bladder (can cause infections) so they said they'd put a diaper on him and would weigh the diaper and cath him later to see what was left. I suggested instead to sit him on a potty with one of those measuring hats in it to see how much he peed himself, but I guess they're not used to kids peeing in a potty and don't have the tools for that? So she put the diaper on him ... and within an hour he peed so much his pants were soaked. Which is sad, but also happy! He peed! Anyway, the doctor was pleased with the urodynamics, and we decided to continue with potty training and to see where he is in 6 months at his next appointment. The doctor thinks he may need a schedule of sitting on the potty every 2-3 hours (which seems like too long to me) to help him stay dry in case he doesn't always know when he needs to. I think the nurse is very skeptical, but I think Nate is going to prove her wrong in 6 months. :) Very happy about this test.

Dr. Tulipan, the neurosurgeon, was happy that Nate isn't having any problems. I bragged on how smart he is and that he's running and jumping! Dr. Mencio is the orthopedic specialist, and as usual he asked, "Any problems? No? Okay, see you next year." I insisted he look at Nate's new braces since I had gone to all the trouble of picking him up that morning for him to see. I told him Nate's right foot turns out some, and he perked up and started looking for tibial torsion. He seemed almost disappointed to see straight legs. Those surgeons just want to operate.

We finally made it home by 9 pm, and I put Blake on Georgia duty so I could sleep. And I slept HARD. Speaking of that, it's time for me to go to bed and try to continue catching up on sleep.

By the way, thank you, everyone, for the very supportive words in response to my last post. It was good for me to write about it, and it also helps to read your kind comments. I'm feeling better every day. And very thankful for Nate's health, and Georgia's health, no matter how cranky she is.

Sharing the not-so-happy news too

I didn't really have any intention of posting what I'm going through right now. Obviously I have a blog and share a lot about my family, but it's almost exclusively the happy news, smiling pictures, funny kid quotes, and cute stories. I'm not one of those people who posts on Facebook everytime I have an argument with my husband or my checking account is running low. Some things are just nobody's business. But today I read my fellow-SB-mommy-blogger's post titled "I'm a Monet" about her life looking picture perfect from a distance, but it gets messy when you look closely. Her honesty made me think. When people ask me how I'm doing, I say fine. But right now, I'm not really fine. And there's no real reason to keep that a secret when I can allow other people to pray for me and help me through this.

A couple weeks ago, on a Thursday, I woke up and rolled over in bed and felt a sharp pull that I immediately recognized as round ligament pain. After having two children, I know what round ligament pain feels like, and I know you feel it when you're pregnant. That evening on the way home from work, I stopped to get a home pregnancy test and took it as soon as I got home. When I saw a very clear "Yes" ... my mouth dropped open. *Shock* We were not trying to get pregnant. At all.

I was FREAKING OUT. Three children. Two under two. Georgia is still just a baby ... still nursing. I can barely keep up with the two I have and am still getting used to my full time job. We got rid of all of our maternity and baby stuff. But what really, really terrified me was that I had not been taking my vitamins. What a hipocrite I am. I stand in front of people at health fairs and tell them to take their vitamins every day to help prevent birth defects, and I'm not taking them myself. With a family history of SB, if there's even a chance I could get pregnant, I should be on a megadose of folic acid. SB happens by the 28th day, and I surely was beyond that point. It was too late. I knew that if this baby had SB, I would never, ever forgive myself because I knew the information and I was just too irresponsible to follow it.

I called Blake--who was happy and excited--and loaded the kids in the truck to go buy folic acid. I took 4 pills as soon as I got home and realized my mouth had been hanging open in shock for the past two hours.

Over the next few days, I decided there was nothing I could do about the vitamins I didn't take. It was all in God's hands, and worrying wouldn't help anything. I allowed myself to get excited. We started talking about names, whether we wanted a boy or girl, where the baby would sleep, we'd need to buy a minivan. We had always talked about whether we'd have a third child, and I guess this made the decision for us! Little things ... I realized I'd need to buy another name charm for my mother necklace. This time we'd save money by buying used baby gear. I thought, I will never sleep again! I cut back on caffeine. And at least 100 times a day, I thought, "I can't believe I'm pregnant." I really could not believe it.

Last Wednesday was the first available appointment at the OB. I just shook my head as I entered that office again, only a year after my 6 week follow up after having Georgia. I received congratulations and reassurance about not taking the vitamins. I had no idea how far along I might be, so they sent me for an ultrasound to date the pregnancy.

Oh, the ultrasound room. It's always been a source of joy and fear for me. My first ever ultrasound was when we learned Nate had SB, and that was not a good day, to say the least. We had a couple more "bad news" ultrasounds during that pregnancy. Then in summer 08, after trying for 6 months to get pregnant, I was alone (well, Nate was there with me) during the ultrasound when I learned the pregnancy was a blighted ovum and I would miscarry. During Georgia's pregnancy, we got only good news during ultrasounds, but those anxieties do not go away.

So last Wednesday, alone in the ultrasound room, my heart sank when the tech said, "Hmmm." She didn't see anything. Nothing at all. This could mean two things: I was less than 4 weeks along and it was just too small to see yet, or it was an ectopic pregnancy (stuck in the fallopian tubes). In the latter case, they'd have to go in and get it, because it's not viable, and it's dangerous for the mom. She said they would look at my hormone levels and call me the next day. If the number was high, it was an ectopic pregnancy. If the number was low, it was probably just too early to see anything on ultrasound. I went home and tried to stay positive. In my gut, I really did not think it was an ectopic pregnancy.

The next day they called and said the number was low, so I was probably just very early in the pregnancy. But something did not feel right. That would mean I got a positive home pregnancy test at least 7 days before my LMP. That seemed very unlikely. I didn't have a good feeling about it at that point, but I waited. The next morning I had to go in for more blood work, and they were to call me that afternoon with the results. If the number had doubled since two days before, everything was fine. If the number went down, that was not good news for the pregnancy.

But that afternoon, before I received the call that the number did go down, I started to miscarry.

My first reaction, inexplicably, was anger. Maybe it was because I was at work and was very, very busy because our Stroll & Roll was the next day, and I knew I didn't even have the luxury of going home to my bed, pulling the covers over my head, and grieving. Or maybe it was because after all the shock and then acceptance of the past 8 days ... it was now just over. It made no sense to me. I went out to the privacy of my car to call Blake and my mom, and then I just had to pull myself together and get back to work. The next day, I worked hard and put a smile on my face, and very few people knew what I was going through.

This was not the right time for another baby, I know that. It could have easily been too much for me with Georgia still being so little and being so new at my job. But for eight days, I caught a glimpse of this path my life was going down, and on that path I had three children. Then before this new reality even really sunk in, it was just gone. And I suddenly had to readjust to the reality of 8 days ago ... which is wonderful--I was and still am totally in love with and grateful for my little family of four. But now there's this loss of something that never even really existed, I guess, but it felt very real to me.

It's been a week, and I still feel mostly numb. I haven't really sat down and let myself have a good cry about it. I've been busy with work and family and life, and when I'm not busy, I make myself busy with distractions. I read this book recently in which the author says that people are so afraid that their emotions are going to swallow them whole and they won't be able to recover from it, so instead of allowing ourselves to feel those emotions, we turn on the TV for distraction or eat chocolate to numb the pain. When if we'd just look those feelings square in the face and just feel them already, we will not die, and we'll be able to move on. That makes a lot of sense to me, and yet I just don't feel like putting it into practice. I don't want to feel this sadness. I'd rather keep distracting myself.

So that's how I really am. I'm not terribly depressed, and I know I'll be okay. But the truth is I'm a little confused and just really sad and pretty much feeling sorry for myself. Prayers are appreciated.